A significant meeting took place on 30th July between trustees and officers of the MS Society and of MS National Therapy Centres to explore ways of working together more closely in the future. Even though close links exist in many local areas, this is the first time in the history of both organisations that such a meeting has taken place at a national level.
MS National Therapy Centres and the MS Society share a common goal – that of enabling people affected by MS to gain access to the services and the support they need to help improve their quality of life.
The mutual strength of both organisations is their membership base and direct involvement in all aspects of their work by people affected by MS. Many people are members of the MS Society and of their local MS Therapy Centre.
The trustees and officers of both organisations warmly welcome this initiative and will now be examining how closer working relationships can be established to benefit everyone affected by MS.
Tony Kennan
Chairman
MS Society
Peter Owens
Chairman
MS National Therapy Centres
AlphaB Crystallin (aBC) is not normally found in the brain, but it can be produced by cells to protect against injury such as brain inflammation in MS. However, aBC is a target of the immune attack in MS thereby preventing its protective activity. In MS disease models aBC is able to reverse the consequences of brain inflammation, which suggests it may have potential as a future therapy.
When myelin sheaths are attacked by the immune system in people with MS, the cells which are under attack defend themselves with inbuilt systems. One of these defences is to release small proteins called ‘heat shock proteins’ which have a protective effect. aBC is one such protective protein and some previous studies have shown that it is present in MS brain lesions and sites of disease activity. Lawrence Steinman, Professor of Neurology at Stanford University in the US demonstrated that the protein plays a protective role in mouse models of MS. When aBC is injected into these mice it can protect oligodendrocytes from death and suppress immune function so the mice experience a less severe disease. He also showed that mice which have been genetically altered so that they lack the aBC gene have a much more severe form of the condition.
The researchers found that antibodies against aBC were much more common in the spinal fluid of people with MS compared to people with other neurological conditions suggesting that the protective activity of aBC may be blocked in people with MS.
If similar findings were discovered in humans, aBC could potentially be used to treat MS in people. ‘It’s a real delight to see that the same material that is naturally produced, that has these protective effects, could potentially be harnessed and used as a therapeutic,’ said Prof Steinman.
26 Jun 2007 www.mssociety.org.uk
The government’s drug watchdog has recommended the use of Tysabri to treat people with highly active relapsing remitting multiple sclerosis (MS) in England, Wales and Northern Ireland.
The National Institute for Health and Clinical Excellence (NICE) had been poised to reject Tysabri in a preliminary evaluation on cost and efficacy grounds.
But following a strong response from the MS Society, other MS charities, people affected by MS and the neurological community, NICE today (3 July) issued a final appraisal recommending its use for a small group of people affected by highly active relapsing remitting MS.
What is Tysabri?
Tysabri, pronounced tie-sab-ree (and also know as natalizumab, pronounced natt-al-iz-yoo-mab) is a new drug for people with relapsing remitting MS (RRMS). It works in a different way to the current disease modifying treatments (i.e. interferons and glatiramer) by preventing immune cells leaving the blood stream and entering areas of inflammation (e.g. MS lesions in the brain and spinal cord).
Is Tysabri available now?
Tysabri is licensed for use in the UK and has been approved for treatment on the NHS for certain groups of patients with MS. Tysabri will now be available for people with rapidly evolving, severe, relapsing remitting multiple sclerosis. People who are currently receiving treatment with Tysabri, but for whom treatment would not be recommended under the new guidelines will have the option to continue therapy until they and their physicians consider it appropriate to stop. Tysabri is not available in combination with beta interferon and people who have a history of immunosuppressive therapies may not be suitable for treatment with Tysabri.
The NHS should provide funding and resources for medicines and treatments which have been recommended by NICE within 3 months of them issuing their final guidance.
03 Jul 2007 www.mssociety.org.uk
The discovery of two genes that increase the risk of multiple sclerosis has brought scientists closer to understanding the cause of the disease and could lead to the development of new treatments.
Two international teams of scientists have found that possessing defective variants of one of two genes increased the risk of MS by 20 to 30 per cent.
Dr Lee Dunster, head of research at the MS Society, said: “One of the great unknowns about MS is what causes it, and this looks like a welcome breakthrough in getting to grips with the genetics behind the disease.
People with MS often worry whether it will affect their children, so a better understanding of the role of certain genes is good news.”
MS can cause muscle weakness, vision loss and coordination problems, and is the most common disabling neurological disorder in young adults. It affects around 85,000 people in the UK.
The illness occurs when the body’s immune system mistakenly attacks myelin - the protective sheath that surrounds nerve fibres.
Drugs can reduce symptoms and slow the progress of the disease, but most MS patients become increasingly disabled over time.
Scientists from the US and Cambridge University found that MS sufferers were more likely to have a gene variation which causes a reduction in the amount of the IL7R-alpha protein on the surface of T cells - crucial immune system cells that patrol the body for disease-causing organisms.
Stephen Hauser, a neurologist from the University of California, said: “I believe that this receptor and its interaction with regulatory T cells will now become a major focus of research on MS.”
On the 29th August the MS Trust launched the first ever exercise DVD aimed specifically at people with MS.
The DVD, features Mr Motivator (Derrick Evans) and aims to make exercise fun and engaging, to enable people with multiple sclerosis to work through beneficial routines in their own homes. 'Move It For MS' is available directly from the MS Trust website www.mstrust.org.uk at a cost of £1 (one copy per order). Alternatively call 01462 476700 to order yours.
30 Jul 2007 www.mstrust.org.uk
An interactive map to enable GPs to quickly locate specialist multiple sclerosis centres and specialist neurology teams throughout the UK has been created by the MS Trust and the MS Society.
NICE MS guidelines say that patients with MS should be referred to a neurologist who specialises in the condition but a national audit of NHS services for people with MS, carried out by the MS Trust and the Royal College of Physicians, revealed that specialist services are not always available.
Professor Derick Wade, clinical Lead on the audit and Professor in Neurological Rehabilitation, Oxford, said: “Referring a person with multiple sclerosis directly to a specialist means that the patient gets the right help at the right time, and also saves the NHS time and money.”
GPs need only click on any of the key 11 areas on the map to bring up a list of all MS centres within that area and the names of all the MS specialists based at them.
The centres listed have extensive expertise in the management of multiple sclerosis; they often have a specialist MS nurse service available plus the ability to offer disease modifying drug therapy.
Neale Pimenta, a GP with an interest in MS from Dartford, Kent, said, “Like any illness, swift diagnosis and treatment often improves outcomes and quality of life issues for the patient.
“However, many neurologists do not have a special interest in MS and initial referral to a consultant without a background in MS management may mean a delay in correct diagnosis and effective treatment for MS patients. This new interactive map will provide GPs, like myself, with a short cut to finding MS specialist teams in my area.”
Chris Jones, Chief Executive of the MS Trust said: “The MS Trust, in conjunction with the MS Society, have worked together to provide this neurology specialists map. We strongly believe that this will be a useful resource for GPs and will benefit patients.”
To see the map and which centres are available please go to:
www.mstrust.org.uk/information/centres.jsp
I work at the Chilterns MS Centre (based in the portacabin) three days a week as the Fundraising Manager for revenue. I have worked in fundraising for nine years and this is the first regional charity I have worked for and it is absolutely wonderful to be based on site where all the patients are cared for. I have met so many fabulous volunteers and supporters and am very impressed with the generosity and resolve when our supporters raise funds for people with MS.
Part of my strategy is to dramatically increase the supporter base and to heighten the awareness of the work of the Centre with different groups such as clubs and societies, individuals and companies. Over the next year there will be a series of Open Days to promote what the Centre does and to encourage people to support us.
There will be lots of other initiatives which will be promoted in Centre Post as well as the website www.chilternsmscentre.org.
There are so many ways in which people can get involved in fundraising. It doesn’t have to be anything complex, for example, you could ask for donations from your friends and family rather than gifts for a birthday or other occasion; donations could be given instead of flowers at funerals or you could have a box for small change at home. If you would like to discuss any idea please feel free to contact me about anything to do with fundraising, particularly if you have any useful contacts or you would like to raise funds for CMSC and I will be happy to speak to you.
Thank you so much for your on-going support.
The Assistant Centre Manager, Carol Mockett’s church has chosen the Chilterns MS Centre as their Charity of the Year. They recently raised a fabulous £2,800 from an Open Garden Weekend. Carol says ‘there is more money in the pipeline for the Centre which we will present early 2008’. For other events organised by the church for CMSC please contact Carol on 01296 696133.
Charlotte Brown, a Centre patient took part in the Great Glen Way in June. She and her husband Nick, who is one of the Centre’s Trustees, flew from Luton and on arrival at the airport they were told, despite previous arrangements, that the airline couldn’t take Charlotte’s tricycle. After discussions it was agreed the tricycle could go to Scotland with them but on arrival at Inverness it was discovered that the tyres of the tricycle were completely flat due to the air pressure in the plane. The actual walk started from Fort William and there was exceptionally beautiful scenery; by the next day the terrain became more undulated and so Nick had to push Charlotte up the hills. Charlotte overcame difficult cycling conditions including a huge amount of tree roots, and torrential rain but it was all worthwhile seeing the banks of Loch Ness. When asked what was the best part of Charlotte’s journey, she exclaimed unfalteringly ‘going down hill’! We would like to say a cheery thank you to Nick who completed 76 miles and Charlotte who cycled 50 miles in five days. Over £4,750 was raised - a staggering contribution.
We had another two successful Skydive events in June and July with 34 people taking to the sky. Monies are still coming in but we are aiming to raise over £16,000 net from the event. Drene de Silva, one of six members of staff from GE Healthcare who took part and has raised almost £5,000 between them, exclaimed ‘It was an incredible experience - something we will not forget; we all really enjoyed it’. Our grateful thanks to all the supporters who were brave enough to jump for the CMSC! If you, or you know of anyone who would like to jump in next year’s Skydive, please contact Fundraising.
Have you thought about leaving a legacy or a
gift in your Will to Chilterns MS Centre? It will be necessary to make provision for your family but
if after that, you feel you can help the Centre further, then that would be fantastic.
It is really important to update Fundraising of your intentions to help Chilterns MS Centre in your Will as it helps with our forecasting income. If you would like to leave a legacy or a gift in your Will please contact Fundraising and we will send you a pledge form or a codicil form as necessary.
There are a number of supporters who help raise funds by displaying a collection box and we are keen to expand the network. Each collection box can typically raise up to £60 so this is a valuable source of revenue they also help to highlight our work in the region. If you know of a public place such as a shop, restaurant, dentist, Doctor’s surgery or company that might be able to take a box, please contact Fundraising giving the details of the possible outlet.
With many different projects going on in the Fundraising Office, we are looking to recruit new volunteers to help. Might you have some time to help in the Fundraising Office at Chilterns MS Centre? It may be that you are given a specific project or can help more generally, depending on your skills and what you are happy doing.We need help with a variety of jobs in Fundraising; jobs such as data inputting, researching ideas, street collections, stuffing envelopes, working on a project or event and much more! Training will be given if necessary.
Cathy who helps in fundraising states; ‘I volunteered to help in fundraising because the Centre helps my husband Clive. They help him I help them, it’s good to put back something back; as the fundraising office is relatively new, it is an exciting time to see it grow’
Celia is also looking for willing volunteers who may like to get involved with a Fundraising Group in the region.
Invesco Perpetual, £207(Dress Down Day); Mr D Richards, £1,088 (St Albans Half Marathon); The John Colet School, £500 (various events); Oxhey Ladies Club, £335 (Table Top Sale); Great Missenden Rotary Club, £229 (Ladies Indulgence Evening); HSBC Bank, £500 (Charity Scheme In The Community); RAF Halton Airmen’s Command Squadron £105; Aylesbury Inner Wheel £1,000; Vale of Aylesbury Sponsored Ride, £500 (Horse Ride); Mr G Wilton, Pipe Tube Group Ltd, £869 (London Marathon); Paul McDowell, £1480 (Sky Dive); Juliens of Wendover, £19 (Collection Box); Mrs B Green, £169 (Bridge afternoon); Also to the many others who have supported the Centre this year. THANK YOU!
Sun 2nd Dec Centre Christmas Party (3-5pm)
For all Fundraising information please contact Celia Blakeway-Phillips on
01296 624000/07792 864796 or email fundraising@chilternsmscentre.org
“Most readers will be aware that the MoD decision to sell land for house building was accompanied by an assurance that we, CMSC, would be given a new Centre to replace the existing one. The accompanying drawing shows the existing layout of the old Princess Mary Hospital and marked by a cross, the location for the new Centre as proposed by MoD and provisionally approved by the Planning Authority, Aylesbury Vale District Council. Also marked on the drawing is a rectangle representing the existing Centre and a triangle which shows an alternative site as proposed by the Developer. At the time of this article the final decision about the location has not yet been made by the Planning Authority.”
John Sykes Trustee
On Friday 28th September Wilma Anic will resign from her position as Senior Physiotherapist at the Centre. She has given us many years of service and has become a personal friend of many. I am sure that she will continue to be a regular face around the Centre and that our friendship will continue.
In the light of Wilma’s resignation Jan announced her wish to stand down as Centre Manager and to take up a more clinical role at the Centre.
As the position of Centre Manager will soon become vacant we have decided to advertise for a new Manager and the advertisements will be published at the end of August.
The Trustees decided to offer Jan the position of ‘Head of Professional Services’ and she accepted the offer. In her new position she will undertake responsibility for assessments as well as a direct clinical role.
In consultation with the new manager she will continue in her role as an ‘Ambassador’ for the Centre. Those that have seen her presentations will know what an invaluable contribution they are to our public image.
The developers, Kingsoak, and Aylesbury Vale District Council are close to reaching an agreement about the site and design of the new centre. Although not parties to their discussion AVDC have assured us that they will keep us advised and will ensure that our position is protected. John Sykes is in close contact with the Planning Department.
As you know this is a member’s organisation and we depend heavily on the input of volunteers so if any of you who do not presently assist could provide any help, no matter how small, please let me know.
John Greaves Chairman
Because of problems with funding we regret to inform you that BDIN may have to cease operating from the end of September. We know that many of you have benefited from the service that they provide and some of you continue to do so.
Any ideas for raising funds would be very gratefully received.
They can be contacted on 01296 487924 or bucksdin@hotmail.com
A Medical Exemption Certificate enables the holder to free prescriptions. The Certificate is available to people with various specific conditions and also with ‘a continuing physical disability which means the person cannot go out without the help of another person.’ Anyone who meets this criteria should get an exemption, so we urge you to apply for this. To obtain a Medical Exemption Certificate you must first complete application form FP92A, available from doctors and surgeries. You are required to complete parts 1 & 2 and your doctor [or an authorised member of the practice] is asked to sign to confirm the information given by you is correct.
Thank You for your support
Celia Blakeway-Phillips
Fundraising Manager
The Chilterns MS Centre, Scarlett Avenue, Halton, Aylesbury, Buckinghamshire, HP22 5PG.
Telephone: 01296 624 000 Mobile: 07792 864796 Email: fundraising@chilternsmscentre.org